process of diagnosing autism in teenagers — Scope | Disability forum

process of diagnosing autism in teenagers

asthmaticwarlord
asthmaticwarlord Member Posts: 3 Listener
edited December 2021 in Autism and neurodiversity
hi, i do not know how to start posts like these, sorry. 

i've had autism symptoms my whole life. 

i was just wondering what the process is like for a teenager to be diagnosed with autism? how long does it take? do they contact your school as part of the assessment process? what is the assessment like?

if anyone has had experience with this and can answer any of my questions i would really really appreciate it. thanks :)
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Comments

  • poppy123456
    poppy123456 Member Posts: 28,448 Disability Gamechanger
    Hi,
    My daughter was 16 when she started the assessment process and 17 when she was diagnosed. 
    First you need to get a referral, once this is done you’ll be placed onto the waiting list but the wait is quite long.. a couple of years in some areas. 
    During the process for my daughter, they needed lots of information from myself from her birth to her age at the time. They visited her college a few times for observations outside class and inside class. Various other intellectual assessments too with lots of questions asked, various tasks to preform. I wasn’t there for any of her assessments and she wasn’t there for my part either. 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Community Co-Production Group Posts: 2,014 Pioneering
    edited December 2021
    Hi @asthmaticwarlord

    Thanks for reaching out to us. I think you worded your questions perfectly well. 

    In terms of yourself, are you also seeking a diagnosis? Just that I notice you say you have also had symptoms of autism your whole life but not sure if you are already diagnosed or recognise symptoms but do not want a diagnosis.

    In terms of your teenager, @poppy123456 has already responded to your question with a comprehensive response. The only things I would add are that your first point of contact would be with your child's teacher and/or SENCO. They can then make external referrals, such as to educational psychologists, pediatricians, and local authority services as deemed necessary. As @poppy123456 said though, this does take quite a while, unfortunately. Though the times will vary based on your local area.

    I hope this helps but if you need anything to be further clarified or you have any additional questions, please don't hesitate to let us know  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her.
  • asthmaticwarlord
    asthmaticwarlord Member Posts: 3 Listener
    Hi @asthmaticwarlord

    Thanks for reaching out to us. I think you worded your questions perfectly well. 

    In terms of yourself, are you also seeking a diagnosis? Just that I notice you say you have also had symptoms of autism your whole life but not sure if you are already diagnosed or recognise symptoms but do not want a diagnosis.

    In terms of your teenager, @poppy123456 has already responded to your question with a comprehensive response. The only things I would add are that your first point of contact would be with your child's teacher and/or SENCO. They can then make external referrals, such as to educational psychologists, pediatricians, and local authority services as deemed necessary. As @poppy123456 said though, this does take quite a while, unfortunately. Though the times will vary based on your local area.

    I hope this helps but if you need anything to be further clarified or you have any additional questions, please don't hesitate to let us know  :)
    Oops sorry about the first part, I meant to go back and finish that paragraph but I never did - I am also seeking a diagnosis myself but it’s very important to her that she gets a diagnosis so that’s my priority at the moment. 

    Thank you so much for answering, you’ve really cleared up a lot and I really appreciate it :)

    I do have a question - would it be possible to go to our GP first to get a referral? I don’t completely trust the school to take this seriously as she gets good marks and is usually very quiet. Thanks so much !!
  • asthmaticwarlord
    asthmaticwarlord Member Posts: 3 Listener
    Hi,
    My daughter was 16 when she started the assessment process and 17 when she was diagnosed. 
    First you need to get a referral, once this is done you’ll be placed onto the waiting list but the wait is quite long.. a couple of years in some areas. 
    During the process for my daughter, they needed lots of information from myself from her birth to her age at the time. They visited her college a few times for observations outside class and inside class. Various other intellectual assessments too with lots of questions asked, various tasks to preform. I wasn’t there for any of her assessments and she wasn’t there for my part either. 
    Thanks so much !! That does clarify a lot, thank you  :))
  • poppy123456
    poppy123456 Member Posts: 28,448 Disability Gamechanger
    A GP can refer if they agree but the process could be longer. You’re better off starting by speaking to the school SENCO.
    One thing I will say is don’t let the school fob you off with things like… “oh, she’s just a quiet and shy girl” or “we just don’t see what you see” “we know her just as well as you do.” 
    I’ve been there and wore the T-shirt so to speak. I fought tooth and nail for my daughter for 14 years and every way I turned I hit a brick wall. Very frustrating to say the least. It wasn’t until my daughter started college after moving 300 miles across the country that finally I was being taken seriously. Things moved quite fast after that but purely because of her age and she missed the first step of the process because of her age. 
    Last but not least, don’t ever give up! Regardless of how difficult it could be for them to agree to assess her. 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Community Co-Production Group Posts: 2,014 Pioneering
    edited December 2021
    Hi @asthmaticwarlord

    No worries at all, just something I picked up on as I read your post thoroughly to ensure you are all supported the best you can be.

    In terms of yourself, when you are ready for a diagnosis, a GP would be the best first point of call. They can then refer you to external professionals as deemed appropriate. 

    Really glad to help in terms of helping you to navigate the diagnosis for your daughter.

    As @poppy123456 says, you could go to your GP for a diagnosis for your daughter but this would most likely take longer. Did you know females present differently than males? If you are interested in exploring this further, here is a link you can look at for more information https://www.autism.org.uk/advice-and-guidance/what-is-autism/autistic-women-and-girls.

    Additionally, autism doesn't necessarily affect IQ or academic attainment so don't let them fool you on that one either! Your daughter is more likely to have average or above-average academic attainment.

    I hope this helps but if you stumble across any more questions or need anything to be further clarified, we are here for you  <3
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her.
  • Adrian_Scope
    Adrian_Scope Posts: 8,572

    Scope community team

    edited December 2021
    Just to echo what @poppy123456 has said from my own experience - we've had to fight for a long time to get our concerns acknowledged and were regularly fobbed off with "they're just shy", "they don't cause any problems" and similar comments. You will usually need to have the school's involvement as they're likely to ask the school for a detailed report or want to do in-school observations (or sometimes both). We went via the GP to get referred and for one of my children they wanted a report from school and the other they were happy to accept notes we'd written detailing our concerns. 

    Please don't worry too much about how supportive the school are, I think the paediatricians are used to this. They rarely do in-school observations in my area so rely heavily on school reports, and one of my children's schools wrote a report essentially saying they had no concerns at all over my child and that they were a model student who got good grades and had perfect behaviour. The paediatrician still accepted the referral. 

    It is a very long process - in some areas the wait time for assessments is nearly 3 years. 

    Best of luck and please let us know how you get on. :smile:
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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Community Co-Production Group Posts: 2,014 Pioneering
    Thanks for sharing your experiences too @Adrian_Scope :)

    I think it largely comes down to the importance of acknowledging the differences in how autism is presented in males and females!

    Hopefully, with time there will be more awareness  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her.

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